Can't seem to taper
Posted , 12 users are following.
I'll admit to some envy of the many posts I read, "I started on 20 mg of prednisone, now I'm down to 3 but can't get to 2." In my case, I started on 20 mg two years ago and was there for a year. My GP never mentioned tapering. He seemed to think it would all resolve on it's own. He became alarmed after a year and gave me a schedule which didn't work. I had been in pain at 20, and by the time I got to 12.5 I couldn't function. After he retired, a new GP thought I should go to 40 and "blast out the inflammation." I did that and felt good until I landed in the hospital with peritinitis. They got me back to 20 in the hospital, and since then, 6 months ago, I've been doing the dead slow taper. Got to 15 fairly easily, am now at 13.5 and in moderate pain. Want to continue, because I need surgery and the surgeon wants me at 7 or below before he'll see me again. That seems like an impossibility at this point. I'll try 12.5 this week, but wondering why I'm stuck at the high numbers while so many others seem to be able to get to the lower numbers relatively quickly.
0 likes, 27 replies
FlipDover_Aust susan29426
Posted
Has there been any talk of trying Methotrexate to help you reduce your prednisone? It doesn't work for everyone, but it certainly helped me.
maid_mariane susan29426
Posted
Hi Susan
I'm constantly envious of how people can taper. I started at 20mg in September 2015 and now tappering to 13mg. Ya 1 1/2 years to not even taper 7mg.
I'm lucky to tapper 1mg at a time using the dead slow method and at the end of each tapper i need to stabalize for a minimum of 3 weeks. So only 4 times a year.
What I'm saying is that i think you have done great don't beat yourself up.
Mariane
amkoffee maid_mariane
Posted
maid_mariane amkoffee
Posted
My #'s are usually around 1 or 2 any higher and i feel it. This last drop to 14 mg they were 3 and 4 and i noticed more weekness and pain so i have to be very careful in this drop to take it easy and eliminate stress which I've been making a conscious effort to do.
I'm learning to say NO, this has taken me over 1 year to learn, I still slip but much better at it.
I am the true tortious definitely not the hare. Lol. From all the blogs I know in 1 year when i get to 10mg I will need to be extra cautious and go back to reducing by only 1/2mg. I had to do that already twice because i was so sensitive and my side effects were so dramatic. I'm just glad i can cope with 1mg drop.
As Eileen would say unfortunately I'm one of the long term patients if you work out the math I'm in for the long haul.
Even with diet change and everything the 1st year i lost 4% bone loss and i swam like a fish to regain movement. My saving grace was that my bone density prior was like a teenager so luckily I'm still in the normal range. My chiropractor has changed the type of calcium i take and i now ensure i take K2 which i was unaware of in the first year.
So for those of you dropping fast count your blessings but be careful you could be me with side effect galore. I joke thay the only thing i dont have is hair loss but I've gained awful facial hair growth 😂
Take care all.
macas02 maid_mariane
Posted
because my dentist did not xray my mouth and I have bone loss and gum disease. The treatment is painful and very expensive so just a warrning make sure your mouth is checked by Xray regularly.
amkoffee maid_mariane
Posted
Well I can't say that I am dropping fast. The first 9 mg went pretty good but getting past that has been a real bear. And when I started my PMR journey I had already been diagnosed with osteopenia but it was not bad enough to be treated with medication. And then three months after my diagnosis with PMR I was diagnosed with prediabetes. So as you can see there are reasons for me to get off prednisone as soon as possible. But of course my body is refusing. The next time I get close to 10 mg I'm going to try to allow for more pain and see if it doesn't pass. Or that is to see if I can handle the pain long enough to see if it passes. I'm afraid part of my problem with pain is that I have chronic pain to start with and have little tolerance for additional pain. But I'm going to make an effort to deal with the extra pain if it happens this time. And one difficult thing is I've had my rheumatologist breathing down my neck bugging me about hurrying up and getting off of the prednisone. That hasn't made it any more easier
susan29426
Posted
First off, thank you all for your input and support. This site is the only source of information I really trust! I've mentioned it to my various doctors, knowing they tend to be skeptical of anything on the internet, but when I convey what I've learned here, they either agree or treat the information respectfully - in part, I think, because they're making it up as they go along, just as many of us are. That said, I saw my rheumatoligist yesterday. Based on 1) my inflammation factors have come down a lot and are just above normal and 2) the shoulder pain I have is assymetrical (mostly on the left), she believes that the PMR is no longer driving my discomfort and that my tapering issues are prednisone withdrawl rather than PMR. So, she did a blood test, I'm to taper 1 mg, then check inflammation again in two weeks. Worth a try. I'll let you know how it goes. Thanks, many thanks, again.
susan29426
Posted
Oh, by the way, I have other shoulder issues - OA, stretched tendons and dry joints - which may be more of an issue now than the PMR. She referred me to physical therapy, which starts in May. For those of you in the U.S. on Medicare, with complex issues: Consider United Health Care (AARP) Plan F. No co-pays, no out of pocket. I've had three surgeries, two more hospitalizations and a team of doctors including a chiropractor and have yet to pay above $140/month for the supplemental.
susan29426
Posted
An update. My rheumatologist thought my problem was prednisone withdrawal and I should drop 1 mg (to 12.5) for a month and tough it out, with a blood test before and at 2 weeks to check sed rate and creactive protein. Well, it didn't go all that well. My inflammation markers were elevated when I took the blood test before the drop, but she said to carry on anyway, so I did. Everything was o.k. for about a week, then extreme pain and fatigue. She told me to continue at 12.5 until blood work in another week. So I did. Test showed that inflammation had increased significantly in two weeks. I notified her that I was going to 15 mg for a couple of weeks, than down to 13.5, then - once stable - would use the DSM method to continue. She agreed. I guess it was worth a try, just hope the flare resolves quickly. I already knew from this site that if it were prednisone withdrawal, the symptoms would have started earlier. So, since she seems open-minded, I'm giving her the link to this site, hoping she'll benefit from what she sees here. Thank you, everygody.
EileenH susan29426
Posted
susan29426 EileenH
Posted
Didn't make much sense to me, either. I am wondering, though, if the inflammation is from something else. (I had peritonitis last year and a major uterine infection - officially cured - this year). Maybe she was thinking the same, but from now on I'll be more likely to go with what I get from this site. Thanks, Eileen, for all you do for us.